There is a larger story about what happened Tuesday when I saw my pulmunologist. For now tho I have a fella from the Civil Rights office I am supposed to do an interview with by phone. It was supposed to be tomorrow. That is off. Last nite breathing was so bad I have to stop talking so I get some better. I dont get much better at this point but not talking and total rest do see minor improvement. I am trying to just take care till I get to the new neuro Tues. I didnt plan to get worse again but did the week my mom went into the hosp because I spent alot of time on the phone helping my sis. Its just bad timing.

If anyone has any suggestions I would sure appreciate it. I asked if next Friday would work as it would be over a week to try to be ready. But even that is a question as I have the big appointment, traveling to univeristy Tuesday. He said no and asked about Tues or Wed. The next Wed I see my surgeon about my right cataract. The beginning of the weeks are just a bad time and I am in bad shape. My daughter is trying to negotiate this and has made all the calls I needed to make today to cancel or move other things so I can not talk all day.

Annie59

Annie59,

Do you know why you are unable to breath? Meaning is it from you MG and your lungs are weak...or do you think it's related to pulminary issues? In either case you should see a doctor today. Perhaps you daughter can call your new neuro and explain the situation and see if you can be squeezed in today. If you're neuro cannot squeeze you in then, I'd go to urgent care. They may not be a specialist in your disease, but maybe be able to provide you temporarily relief/treatment of the symptoms until you can meet with your new neuro.

I'm very concerned that a snowball reaction will occur and you will go into MG crisis. It is not good when your involuntary muscles, like lungs or heart, start to become weak...that by definition is MG crisis. This is not something to "wait out" and see what happens. Action needs to be taken.

Take care and keep me posted.

It is the neuromuscle part of what goes on with me yes. I have this great fella who is my breathing guy and I just saw him Tuesday. He knew I would get worse as we have discussed this that tests make me worse. Just the trip there makes me worse. He did question if I sshould come as I am alot worse and he sees the Neuro on this next Tues the priority as he is a 'lowly pulmunologist' as he says. He is very very humble. I had talked to him by phone on 10-14 has I was somuch worse but he emailed my current neuro and she called me and as usual was very wishy washy and would not promise to treat me and said I HAD to do all the breathing tests first in the lab whether they made me worse or not. I said well then will you give me a shot or prostigmin as they would make me better before I go home. She said no she didnt have it her in department and it would be hard to get it from neuro optho. Anyyway I called my pulmo back and said I could come given her terms that she doesnt get how sick I am so it is better to wait till the new neuro on Nov 2nd (turned out it was the 9th tho).

This pulmo is the head of the testing lab at this university and one of the senoir docs. He asked if I could just do 2 tests Tuesday. I will post the rest separately. Sorry I thoguht it would be done by now. My brain is so fried and I am kinda lost again from the stress and fear of Tuesday.

Annie59

understandable. Well, if you must wait until tuesday, perhaps you can do some mediation. put on some relaxing music (classical, birds chirping, rain, anything) and utilize controlled breathing (even if it's not as deep as you'd like). it may help reduce you stress.

i send you wishes of wellness

Good point. When my symptoms get like this the day can get away from me. I am gonna go now and do my acupuncture. Annie59

Got back into my hypnosis program which had fallen by the way. Also realized that in some ways it was bad timing that I skipped the last acupuncture appointment. I always get a chunk of destress from that like a person would from a massage. (does anyone get massages? Is it safe?).

Since I had some improvement after the nites rest it came to me at a certain point what I had to do about the above. I HAD to push for an extension. This is a body that works for those with disabilities! Certainly they must run into someone who is too sick to go forward from time to time. I called and said this cant be done in the next 2 weeks and I apreciate they have the 100 day turn around but the next 2 weeks have to be focused on these crucial medical appointments. I said there must be a way to do that. She said a delay would require a letter. I said done! My doc will do that. Subject closed. My daughter just needs to learn to push these people to get these kind of options/answers.

Annie59